Disability, Discourse and Technology: Agency and Inclusion in (Inter)action

By Najma Al Zidjaly

Exclusion is the main predicament faced by people with disabilities across contexts and cultures, yet it is one of the least academically studied concepts. This book offers an applied linguistics perspective on critical and timely issues in disability research, filling in a number of gaps in discourse analysis and disability studies.

• Language: English
• Publisher: Palgrave Macmillan
• Release date: Apr 29, 2016
• ISBN: 9781137519573

Book preview

1

Inclusion in (Inter)action

How and when it all started

On the evening of January 4, 2002, during a one-month pilot study, Yahya, a 46-year-old Omani man with quadriplegia, of whom I am a friend and a caregiver, expressed his wish to take his daily shower. I promptly obliged by interrupting the conversation I was involved in with his sister, Fatima, and called out for his resident assistant from India, requesting that she fetch Yahya’s commode chair. Upon hearing my request, the assistant, who had been caring for Yahya for one year, similarly interrupted the action she was involved in (washing the dishes) and hurried to the main bathroom where Yahya’s commode chair was seated. Yahya’s teenage nephew, Hythum, also offered his help upon entering Yahya’s room. As the assistant placed the commode chair in the right angle at the right side of Yahya’s bed and took her position behind the commode chair, the following series of negotiations between the five of us ensued (these were captured by video-recorder and occurred in Arabic; what follows is the English translation):¹

((Yahya lifts his arms up. I grab him from his upper arms and pull him toward me. Meanwhile, the assistant puts her hands around Yahya’s chest from behind and Hythum places one hand on the medicated pad in anticipation of pulling it out as soon as the assistant and I lift Yahya up))

This is the interaction in 2002 that started it all. At first, I was intrigued by the chain of actions that led to Yahya’s transfer to his commode chair. This soon turned into philosophical queries concerning the collective and collaborative nature of human agency. Thereafter, those questions generated more specific probes aimed at examining the links between discourse and action on one hand and the notion of inclusion and attempts at exclusion, especially in relation to individuals with quadriplegia, on the other. Twice in this conversation, and in numerous subsequent incidents, Yahya was either not directly addressed or somebody else jumped in to respond on his behalf. In both cases in the above extract, Yahya signals his wish to be addressed and his ability to respond for himself, indicating his requirement to be included. The role that caregivers, especially family, and language play in reinforcing the identity of persons with disabilities as agents shortly proved to be intriguing as well. Subsequently, questions emerged regarding Yahya’s use of technology and the effects it had on constructing his agency through offering him ways to combat exclusion at various levels.

What this book is about

This book is about the agency of people with disabilities. It is also an applied sociolinguistic manual on how to conduct multimodal research that is empirically rigorous, theoretically grounded, socioculturally sensitive and activism-oriented. Through analysis of various types of real-time data collected as part of a longitudinal, ethnographic case study involving one Arab Muslim man with quadriplegia and members of his social circles, the book presents a new framework for the analysis of agency and inclusion as interactive, multimodal and mediated accomplishments. The book argues that opening up the perimeter of analysis to integrate both local and global aspects of talk and actions is the best method for systematically analyzing the lived experience of disability, which indubitably displays itself in the daily verbal and non-verbal arbitrations of inclusion. In presenting this argument, the book draws upon and develops the integrative theory of mediated discourse analysis (Scollon, 2001a) that enables the capturing of the moment-by-moment attempts at inclusion inherent in communication across ability status and across modalities. In particular, it enables the examination of the role that a seemingly dependent person (named Yahya), his caregivers, discourse, art, technology and elements of the broader culture can, and do, play in the discursive reinforcement and diminishment of his identity as an agent. In rendering a comprehensive analysis of the processes of agency and inclusion in (inter)action, the book thus dispels stereotyped beliefs about persons with disabilities (in the Middle East and beyond).

The book provides answers to the following questions:

How does a person with a physical disability manage everyday attempts at exclusion and create inclusion through discourse and technology?

What is the exact role that discourse and technology can play in exercising agency?

What role does the Internet, through programs such as Yahoo chatrooms, play in effecting change in the agentive identities of persons with disabilities?

Can micro level discourse and art created by individuals using Microsoft PowerPoint and YouTube lead to macro level social change? Alternatively, can macro level actions (such as changing a law) lead to micro level personal change? In other words, what is the connection between micro and macro levels of discourses and actions?

What can a multimodal, qualitative analysis of inclusion in (inter)action and across modalities from the Middle East tell us about disability and inclusion? What does such a study add to the international research on disability? What does it add to linguistic research in general?

Disability, Discourse and Technology’s implications reach far beyond disability studies, discourse analysis, technology studies and the Middle East, however. The multimodal analysis I therein present problematizes the notion of an autonomous agent by illustrating the collective and co-constructed nature of human agency; it questions the stereotypical categorization of persons with disabilities as agentless, dependent bodies; and it calls for blurring the existing distinctions between people (both caregivers and those they care for) and the mediational means they bring into play. The study hence enriches recent academic discourses that call for a more ‘critical’ approach to disability, wherein documenting the lived experience of disability and the agency of persons with disabilities is at the forefront. The book further challenges us to eradicate exclusion, the main quandary of living with a disability, at the source by elucidating how we conceive of disability in our thinking, which readily translates itself into day-to-day interactions, and demonstrates how, if left untreated, these interactions coalesce into social discrimination.

Key analytic ingredients

This study provides the first multimodal, qualitative and descriptive account of the interrelationship between disability, discourse and technology across religious, social and cultural contexts, a relationship that is more often presumed than demonstrated. It is also the first multimodal analysis of how inclusion is managed in interactions between a Muslim Arab man with a disability and his caregivers through narrative and non-narrative discourse, art and computer-mediated communication. Thus, in this section, I synopsize key disability concepts, terminology and research to contextualize the study academically, socially and culturally. This is all the more crucial given that a main objective of this project is to capture the link between micro level actions (such as hypothetical narratives) and macro level actions (creating social change).

Disability studies

This book builds on and contributes to the well-established academic field of disability studies, which emerged in the 1960s and 1970s in Europe and North America in response to traditional conceptualizations of disability.² To avoid positioning disability as a biomedical quandary perpetuated by individuals—and fueled by political motivations during the latter part of the 20th century—groups of persons with disabilities in Europe, Canada and the United States joined forces with researchers from diverse fields such as sociology and anthropology to demand their lawful rights, inevitably leading to many disability acts throughout the northern hemisphere. Therefore, while academics were influential in shifting the mode in which ‘deviance’ was conceived, the primary challenge to orthodox views came not from the academy but from activists with disability (Barnes et al., 2002; Barnes, 2012). Jointly, they shifted the focus from viewing the ‘disabled body’ as a setback to constructing the disabling society as the group at fault, rendering the cause of disability a social, cultural and a political construct, similar to paths taken in the gay and Black movements (Driedger, 1991; Vehmas, 2008).

As an ever growing interdisciplinary and multi-disciplinary field of study, disability studies has had its fair share of successes and challenges. Undoubtedly, it has highly contributed to international disability policies and to the academic and political discourse on disability, such as in Oman, wherein my research was conducted. Nonetheless, many contentions and ensuing debates remain. I now synopsize three of the chief concerns facing disability studies today. These are the most germane to the arguments put forth in this book, and provide a fundamental backdrop to my case study analysis.

The question of theory

The cornerstone theory upon which disability studies is built is the social model of disability (Thomas, 2007).³ The model, following policies of the Union of the Physically Impaired Against Segregation (UPIAS, 1976), distinguishes between impairment and disability, and centralizes identifying and eradicating all processes of exclusion, including physical, psychological, social and cultural barriers.⁴ Countless critics have mistranslated the model’s distinction between physical and social lack of ability, and the model’s foregrounding of outside barriers, as an unaccountability of impairment as a root of disability (Barnes, 2012). Accordingly, this has resulted in the characterization, by many, of the social model as limited in its capacity to address disability wholly (e.g., Shakespeare and Watson, 1997; Mulvany, 2000; Shakespeare, 2006; Goodley, 2011; Grue, 2011). Calls for a more complex theory that takes into account physical impairment abound (e.g., Hughes and Paterson, 1997; Hedlund, 2000; Seelman, 2003; Anderberg, 2005; Grue, 2011; Watson, 2012). Most interesting—and the most relevant to the findings of this book—are the proponents of theorizing disability more critically (e.g., Davis, 1995, 2013; Kasnitz, 2001; Chouinard, 2009; Goodley, 2010; Mitchell and Snyder, 2012; Shildrick, 2012). According to the critical disability lens, the traditional focus on physical barriers and the corresponding conventional thinking of binary designations (e.g., abled or dis-abled, normal or abnormal) must be deconstructed and transcended, for such misconceptions that paint people with disabilities as ‘different’ are argued to be neither viable nor serving the cause of disability any longer. On the contrary, they reinforce disempowering notions about persons with disabilities and, ultimately, what they can do.

The question of research

Conducting research that ultimately serves to eradicate social ostracizing has been one of the major objectives of disability activism since the inception of disability studies. The main contention presently is the validity of the idea of emancipatory research, which builds upon UPIAS ideals and was petitioned by Oliver (1992), a key founder of the field, in response to antiquated means of conducting research that did not sit well with the agenda of disability studies. Although emancipatory research, commissioned and controlled by persons with disabilities and their organizations (Department of Human Services [DHS], 1992), has forever altered disability policies by focusing on finding and eradicating social barriers (Barnes, 2012), Watson (2010, 2012), a second key figure in disability studies, rightly contends that it has failed to in reality emancipate people with disabilities. He explicates that by focusing on mental and physical disabling barriers in society, the concept of personal agency among people with disabilities to overcome and eliminate them is ignored. Moreover, past emancipatory research has neglected to address the eradication of barriers close to home that dominate the everyday lives of persons with disabilities (Watson, 2002). Thus, it is widely argued that it is time for disability studies to move away from emancipatory research and embark upon what Watson (2012) terms a critical realist agenda that explores individual experiences and foregrounds ablism instead of disablism. The new critical research agenda, hence, encourages a bottom-up rather than a top-down research agenda, whereby findings are generated from personal experience, not from theories.

The question of culture

Disability is a global concern that is culturally relative (Ingstad and Whyte, 1995, 2007). Accordingly, the United Nations’ (UN) mission has focused on scaling global concerns to local contexts since the creation of the Convention on the Rights of Persons with Disabilities in 2006.⁵ Notwithstanding international efforts, little is known of the nature of disability in developing countries in the non-Western world.⁶ This failure in capturing the experience of persons living with disability in vast parts of the globe is one of the primary critiques in disability studies, as the field prides itself in being international; this is all the more disconcerting given that people with disabilities in developing countries, including in the relatively oil-rich Arabian Gulf, are not as privileged as in the Western nations, where access is a right, evidenced both in theory and practice. In contrast, equal access and rights for people with disabilities stop at theory in many Arab countries, due to poor economic conditions (especially in North Africa), demeaning cultural perceptions and continuous political struggles. The result is a glut of practices that are adopted by the state but which are not implemented locally. Additional factors that may have contributed to the paucity of disability literature from non-Western settings include Western researchers having no or limited access to or interest in pursuing or researching disability systematically in non-Western countries, perhaps due to language and other cultural considerations. Moreover, local researchers often lack training in research, or document the experience of disability in only non-European languages. As a result, this work is considered unreliable and is not widely disseminated, resulting in Arab people with disabilities becoming derelicts of international disability discourse.

Disability and discourse analysis

Disability studies aims to illuminate and eliminate all forms of discrimination against people with disabilities. Likewise, discourse analysis, a field which examines language in use, or the way language is used in social contexts or in communication with others to ‘enact’ activities and identities (Gee, 1990), addresses linguistic, social and cultural discrimination. Nonetheless, the role that language plays in shaping the experience of disability and in creating discursive exclusion has been only minimally studied (see Barton, 1996; Al Zidjaly, 2005, 2006, 2009; Grue, 2007, 2015). The lack of literature is notable, given that language is a primary means of identity construction and discrimination, or social exclusion, often occurs first and foremost at the basic linguistic level—in communication. A related phenomenon that constructs the social reality of disability but which has also been largely ignored until very recently is the role that semiotic systems other than language can play in creating disability. These lacks are in part due to challenges of access. That is, carrying out discourse analysis research requires gathering primary data using audio- and video-recorded real-life interactions. This type of access may not be attainable for most academics, as few people are open to being audio- or video-recorded on a daily basis as part of a research project conducted by strangers. Often, only those discourse analysts who have a family member with disability take on this type of analysis. It follows that scarcity of linguistic or discursive research on disability is due in large part to difficulty of access.

Disability and naturally-occurring conversations

The first cluster of discourse analysts working on disability draws upon theoretical orientations that view communication as co-constructed (e.g., interactional sociolinguistics and conversation analysis). This group offers two main contributions. First, it brings attention to the danger of decontextualizing the communicative behavior of people with disabilities and, second, it emphasizes the importance of examining real-life conversations, as they shed light on the agency of people with disability and provide evidence for exclusion at its worst. The key figure in this research is Hamilton (1991, 1994, 1996, 2003). Her intratextual and intertextual analysis of her interactions as a caregiver with an elderly female Alzheimer’s patient informs her argument that when we analyze only the communicative behavior of persons with disability, we risk mislabeling them and obscuring the reality of what they are capable of. The result is a misguided evaluation of the lived experience of disability, for others’ preconceived ideas about disability often affect how conversations involving people with disabilities unfold. A more recent participatory research project is that of Williams (2011), who too demonstrates the importance of analyzing naturally occurring interactions involving those with disability. Williams’ qualitative examination of conversational turn-taking and adjacency pairs, for example, in both everyday life and in more formal contexts between people with intellectual disabilities and their supporters, raises a formidable caution: that people with intellectual and/or other disabilities are at an all-time risk of losing their agency, their voice, in everyday conversations as others are quicker to take their turns and perhaps even the whole floor of conversation from them. All in all, this research highlights the idea that identities and meanings are collaboratively constructed by all participants, not just those deemed with disability, stressing, accordingly, the requisite to contextualize data and be mindful of interactions involving dependent agents.⁷

Disability and non-verbal communication

The key figure in disability and non-verbal communication is Goodwin (1995, 2001, 2011), whose research examines the interplay of the semiotics of gesture, gaze, pointing and other bodily movements in interactions involving an aphasic man with limited vocabulary and his caregivers using conversation analysis and ethnomethodology.⁸ Goodwin’s work emphasizes the multimodal dimensions of communication and demonstrates both the co-construction of meaning and the significance of examining the caregivers’ role in understanding the agency of people with disabilities. Other notable researchers who have successfully led critical and socially-driven multi-semiotic discourse analysis are Everts (2004, 2012) in the area of visual disability and Keating (2003) in the area of hearing disability. Everts’ (2004, 2012) analysis demonstrates that the root of social exclusion among people with visual disability stems from their inability to observe the visual semiotics of face-to-face interaction, such as gaze, turn-taking and gesture. Everts thus demonstrates that speech and hearing are insufficient to guarantee equal access to conversational participation, contrary to widely-held beliefs. Additionally, she asserts that one can begin to address and rectify communicative problems across ability-status by identifying discursive practices that produce linguistic marginalization. Similarly, Keating (2003) illustrates through analyzing gaze, gesture and turn-taking across ability status that unshared sociolinguistic practices and hearing-oriented participation frameworks are crucial aspects of communicative failure between hearing and deaf children in mainstream elementary school settings. All these multimodal studies point to the necessity for abled, hearing and sighted people to develop communicative skills that accommodate people with physical, visual and hearing disability for proper inclusion to take place. All in all, available multimodal examinations of the social reality of disability from a discourse analytic perspective, while scarce, reveal the agency of people with disabilities and the significance of continued research on communication involving people with disabilities.

Disability and critical discourse analysis

A second group of disability discourse researchers draws upon the tools of critical discourse analysis, an approach that views language as a form of social practice and focuses on the ways social and political domination are reproduced in text and talk. This research (e.g., Pinto, 2000; Rogers, 2002; Kang, 2009; Stamou and Padeliadu, 2009; Nunkoosing and Haydon-Laurelut, 2011) collectively addresses how disability is verbally constructed in various contexts, including disability policies, medical referrals and educational contexts across the globe. These examinations highlight the hegemony of the disability movement discourse globally, opening up new possibilities for reshaping power relationships we take for granted. Additionally, this group’s main contribution to disability studies is demonstrating how the verbal or textual language used for description of or discussion with people with disability can create or alleviate disability. It follows that we must pay attention to how we construct disability through language (Grue, 2007, 2015). Moreover, the research illustrates how disability, to a certain extent, is discursively constructed since language creates reality. The researchers in this group further make evident that these constructions are historically produced and reproduced every time we engage in them. Kang (2009) explains that taken for granted labels such as ‘normal’ and ‘abnormal’ and ‘abled’ and ‘disabled’ are not objective facts, but subjective interpretations. By changing them, we can change the perceptions they entail. Consequently, our present conceptualizations of people with disabilities are not natural facts fixed in stone; rather, they are the result of past discourses that can and must be transformed and replaced with fresh ones.

Disability and technology

Research that addresses the relationship of new media technology to disability falls into two camps. Many scholars suggest that new media technology alleviates disability by allowing people with disabilities to mask disability, escape physical reality, balance power compared to others, create a private space for self-expression and create independence (e.g., Sproull and Kiesler, 1986; Grimaldi and Goette, 1999; Ford 2001). Others contend, in contrast, that technology in fact creates disability in various cases (e.g., Kaye, 2000; Goggin and Newell, 2003; Seymour and Lupton, 2004; Annable et al., 2007; Goggin, 2008; Ellis and Kent, 2011).⁹ Goggin and Newell (2003), for instance, point out the irony that is still present in the telecommunications field, whereby, on one hand, high-tech technologies that are inherently beneficial for those with disabilities are created and, on the other, those with disabilities are typically excluded in the designs of those same technologies. This argument is consistent with Brown and Duguid’s (2002, p. xi) proposition that technology designers need to be mindful of the physical and cognitive resources consumers will draw upon when using their products. The needs and aspirations people have regarding their social lives remain a significant factor driving technology decisions, especially since we quite often underestimate what consumers can in fact do with the technologies constructed for them (Annable et al., 2007). This necessitates conceptualizing the discourse on technology to include the consumers in defining and controlling technology, especially in the current social media age: It is a call for a reshaping of the research on disability and technology, as I argue in Al Zidjaly (2010). To understand the exact relationship of technology to disability, it is critical to identify specific technology-related actions that people with disabilities recognize as being of use to them personally and to examine them contextually. This is currently missing in research on technology and disability.¹⁰

Key terms

As previously mentioned, the central theme that disability research collectively addresses is social exclusion, the major predicament faced by people with disabilities. This exclusion and related discrimination can manifest as personal, interpersonal and institutional barriers and can exist in all societies, irrespective of economy and development. That is why the eight main principals of the UN’s Convention on Persons with Disabilities can be boiled down to one goal: full and effective participation in society (i.e., inclusion). Notwithstanding the ubiquity of the quandary of exclusion, a close examination of specific interactive practices through which inclusion and exclusion are constructed is almost nonexistent. This is all the more alarming as it is in discourse (in conversations) that exclusion is first experienced—such as when people with disabilities are not heard, are spoken for (as in the opening example of this chapter) or when they are shut out of daily interactions. This barrier exists both at home among the caregivers and in public (e.g., in hospitals). Both classic (limited) sociological accounts of living with a disability (e.g., Murphy, 1990; Robillard, 1999) and more modern ones (e.g., Sellou, 2012) perpetuate mostly a passive image of individuals with disabilities in managing such experiences. Even in more agentive accounts of living with disability (e.g.,